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04-07-2015 | Uitgave 11/2015

Quality of Life Research 11/2015

Construction of a Quality of Life Questionnaire for slowly progressive neuromuscular disease

Quality of Life Research > Uitgave 11/2015
Antoine Dany, Coralie Barbe, Amandine Rapin, Christian Réveillère, Jean-Benoit Hardouin, Isabella Morrone, Aurore Wolak-Thierry, Moustapha Dramé, Arnaud Calmus, Sabrina Sacconi, Guillaume Bassez, Vincent Tiffreau, Isabelle Richard, Benjamin Gallais, Hélène Prigent, Redha Taiar, Damien Jolly, Jean-Luc Novella, François Constant Boyer
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Electronic supplementary material

The online version of this article (doi:10.​1007/​s11136-015-1013-8) contains supplementary material, which is available to authorized users.



To build a questionnaire to assess health-related quality of life (HRQL) in patients suffering from slowly progressive neuromuscular disease (NMD) using item response theory (IRT).


A pool of 64 items and a validated questionnaire (WHOQOL-BREF) were administered to 159 patients recruited in eight NMD referral centers. Exploratory statistical analysis included methods derived from both IRT and classical test theory.


We constructed a questionnaire named QoL–NMD which is composed of two general items and 24 items classified in three domains: (1) “Impact of Physical Symptoms,” (2) “Self-perception” and (3) “Activities and Social Participation.” Each domain has good psychometric properties (Cronbach’s alpha > 0.77, test–retest ICC > 0.81, Loevinger’s H > 0.41) and meets IRT assumptions. Comparison with the WHOQOL-BREF enabled assessing similarities and discrepancies with a generic questionnaire.


This study enabled the development of a new HRQL questionnaire specifically designed for slowly progressive NMD patients. The QoL–NMD is short enough to be used in clinical practice (26 items). The next steps will be to validate QoL–NMD by re-assessing psychometrics in an independent sample of patients and calibrate the IRT scoring system.

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